Definition of the problemFrom an ethical point of view we analyse the ruling of the German Federal Joint Committee (Gemeinsamer Bundesausschuss, G‑BA) of September 2019 to revise the guidelines about the coverage of noninvasive prenatal tests (NIPT) by mandatory health insurance, in order to include them under specified conditions. The decision contains four essential elements: a definition of the aim of NIPT testing (to avoid invasive testing), a criterion of access (test must be “necessary” for the pregnant woman to tackle (...) her individual situation), statements about the process of decision-making (after counselling by a physician and case by case) and a normative contextualization (termination of pregnancy under § 218 a German penal law) which is to be found in its explanations. There are tensions in the proposed model that oscillate about two axes: (1) The suffering that results from a possible birth of a child with trisomy or from not knowing about the genetic condition of the fetus can ultimately only be evaluated subjectively, from the perspective of the pregnant woman. (2) The meaning of an individual decision in the case-by-case model remains unclear because when judging about individual cases general points of view also need to be considered. However, we argue that the model of the G‑BA could be a sociopolitically and ultimately also ethically defensible pragmatic solution, exactly because of its paradoxes and its inherent flexibility. (shrink)

Palliative care names as one of its central aims to prevent and relieve suffering. Following the concept of “total pain”, which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient’s psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other (...) means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide, or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers’ efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS. (shrink)

Der Begriff Leiden ist in der Medizin und in der Bioethik bisher kaum reflektiert und dahingehend in normativer Hinsicht wenig bestimmt. Dennoch bildet das Leiden an einer Unfruchtbarkeit den Ausgangspunkt für die medizintechnischen Interventionen der assistierten reproduktionsmedizinischen Behandlung. Dabei wird implizit angenommen, dass der unerfüllte Kinderwunsch ein Leiden ist. Ob der unerfüllte Kinderwunsch allerdings ein Leiden darstellt, ist bisher nicht eindeutig geklärt worden.Ziel dieses Beitrages ist es, die Annahme, dass es sich beim unerfüllten Kinderwunsch um ein Leiden handelt, zu überprüfen. (...) Anhand der Darstellung einiger gängiger Leidenskonzeptionen werden Merkmale von Leiden herausgearbeitet, die als treffende Grundannahmen für eine Leidensbestimmung gelten können. Es wird sich zeigen, dass der unerfüllte Kinderwunsch, entsprechend der Leidenskonzeptionen, als ein Leiden angesehen werden sollte, und ihm somit ein normativer Stellenwert zukommt. In einem weiteren Schritt ist zu klären, ob das Leiden an einem unerfüllten Kinderwunsch als ein Rechtfertigungsgrund für reproduktionsmedizinische Interventionen gelten kann. Dafür wird zum einen der Stellenwert von Leiden, als eine anthropologische Grundbedingung, im Zusammenhang mit dem Leidenslinderungsauftrag der Medizin diskutiert. Zum anderen werden die Risiken der reproduktionsmedizinischen Therapien sowie deren Bedeutung als Gesundheitsressourcen erörtert. Dabei wird deutlich, dass Leiden an einem unerfüllten Kinderwunsch immer ein psychosomatischer Komplex ist. Nur unter Berücksichtigung der psychoexistenziellen Dimension des Leidens ergibt sich eine Legitimation für eine angemessene somatische Intervention. (shrink)

Definition of the problemIn medicine and bioethics, the term “suffering” is not clearly defined from a normative point of view. Nevertheless, suffering due to infertility is the starting point for medical interventions in assisted reproductive medicine. This implies that the unfulfilled desire to have children is a form of suffering, but the validity of this statement has not yet been clarified.ArgumentsBased on descriptions of some common concepts, certain characteristics of suffering are identified. We discuss the significance of suffering as an (...) anthropological condition in connection with the mission of medicine to alleviate human suffering. Furthermore, the risks of reproductive treatment and their significance for health are addressed.ConclusionWe conclude that the unfulfilled desire to have children is a form of suffering, and therefore has a normative value. The legitimacy of appropriate somatic intervention can only be established by taking the psycho-existential dimension of suffering into account. (shrink)